Neurorehabilitation – what it is and what it can offer?

What does neurorehabilitation mean? Proper neurorehabilitation is a team process that involves the person with the disability, their family and the key clinicians, such as physiotherapist, occupational therapist, speech and language therapist, psychologist and the medical consultant. The difficulties that the person has should be properly discussed and the whole team should come to a decision about what is possible to be achieved through a therapy programme. Goals are set and agreed and then reviewed as progress is made.

Many people view rehabilitation as a short term process that happens for a brief period of time after the neurological injury, such as an acquired brain injury or spinal injury. However, it is a process that can help anyone with a neurological disability, such as those with cerebral palsy or those with deteriorating conditions, such as multiple sclerosis. There is now very good evidence that a neurorehabilitation team can make a real difference in terms of better function, less complications and an overall better quality of life. Some people also think that rehabilitation is purely about the physical side of life. Certainly good quality physiotherapy is vital for those with neurological problems. The physiotherapist can improve functioning, reduce spasticity, help with seating and provide broader advice on community mobility, such as the need for driving adaptations. An occupational therapist can also help to improve physical functioning, particularly in the arms and hands, as well as provide expert advice on the huge range of disability equipment. The speech therapist can also help with speech and communication problems and provide advice on swallowing difficulties for some people with particular neurological problems. However, the rehabilitation team should not be confined to the physical side of disability. Many people with neurological disability also have cognitive or intellectual problems or problems with behaviour or emotion, such as aggression, short temper, depression or anxiety. These difficulties are as important, and in some cases more important, than the physical problems. These difficulties can be helped by a proper assessment and advice from a neuropsychologist. A neurological rehabilitation physician can also provide an overview of a person’s problems as well as giving specific medical advice, such as the use of drug prescriptions for muscle spasm, for bladder disturbance and epilepsy.

There is now very good evidence that this whole team approach produces greater benefits than just a one-off outpatient visit or one-off community assessment. I have seen many people who develop unnecessary problems simply because they have not had access to such a team.

This is the heart of the problem. There are many people with long term disability, such as cerebral palsy, who simply cannot access such a team because so few exist in the UK – and across the world. There are some parts of the country where there is a long term disability team but such teams mainly concentrate on children or young adolescents but when the person becomes an adult the services seem to disappear. There are a few acquired disability teams across the UK that help people in the longer term but these largely focus on adult acquired conditions, such as traumatic brain injury, spinal injury or multiple sclerosis. It is a sad reflection of the National Health Service that there are so poor services for people with longer term problems that were acquired in childhood, particularly cerebral palsy but also other neurological conditions, such as the muscular dystrophies. There are some people who are, in a sense, fortunate enough to be involved in the legal process as a legal settlement can make money available to provide such a team privately. It is a pity that such private provision is not available for everybody.

Can anything be done? The local authority (Primary Care Trust) and the social service departments have a legal obligation to assess someone with a disability and provide appropriate treatment. Thus, it is always worthwhile asking for such an assessment, particularly if problems of the disability are beginning to emerge, such as poor seating, pressure sores, muscle contractures, significant depression or adjustment problems, etc. If an assessment cannot be provided or ongoing treatment cannot be provided after an assessment then it is always worthwhile writing to the PCT or local authority (?social service department) and making a bit of a fuss. Sometimes these statutory bodies will not recognise they have a problem until someone tells them so! A letter to a MP can sometimes bear fruit.

It is sad that many people have to resort to such measures to get access to a neurorehabilitation team. Such services are slowly improving in the UK and are significantly better than when I first entered the field about 30 years ago. Progress is being made but it is painfully slow. Neurorehabilitation can make a real difference but in many parts of the country we still have to lobby to obtain it.

Professor Mike Barnes

Honorary Professor of Neurological Rehabilitation

Newcastle University

August 2009